New lease on life for kids with cancer, blood diseases

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MOTHER CRISTY: Seeing that your child survive a rare disease, grow up and live a normal life or even participate in fun and educational activities with his fellow young survivors, all the sacrifices are worth it. Photo by Charles E. Buban

Twelve-year-old Mon Christian Monsanto knows this drill all too well. After he lies down on the hospital bed, a needle is inserted into the veins of his lower arm or hand to draw blood. This process is done to replace his red blood cells with fresh and healthy ones. Then he waits for a couple of hours until the nurse informs him that the procedure is over.

“I no longer feel the pain,” said Monsanto, referring to the needle insertions and blood transfusions he has been taking three to four times a week since he was 4 months old.

While most children his age would be spending their time playing computer games, bonding with friends, or visiting malls, Monsanto’s days have been filled with more sobering activities like taking his daily dose of an iron chelator pill to remove excess iron from his body (the buildup of which is a result of frequent blood transfusions).

Monsanto has thalassemia, an inherited blood disorder that affects his ability to produce normal hemoglobin, the protein that carries oxygen in the blood and throughout the body.

Had his condition not been addressed when he was still an infant, Monsanto could have suffered severe anemia and bone deformities. He may have died before reaching the age of 10.

“But like the rest of the children here at the Philippine Children’s Medical Center who suffer from various forms of childhood cancers as well as rare blood disorders, Monsanto’s chance of growing up into a healthy and more productive adult is getting much better,” related Dr. Mitch Rodriguez, PCMC consultant and head of the hospital’s Long-Term Survivors’ program.

PCMC reports that most children under their care were successfully coping with their debilitating and often fatal conditions. They have even survived their battle against retinoblastoma (cancer of the eye), acute lymphoblastic leukemia (cancer of the white blood cells), lymphoma (cancer of the lymph nodes) as well as rare blood disorders like that which afflicts Monsanto.

As sort of thanksgiving, Monsanto and 21 fellow young cancer survivors visited the 7.5-hectare Avilon Zoo (currently the largest zoological institution in the Philippines) in Rodriguez, Rizal, courtesy of PCMC and sanofi-aventis Philippines together with its “Blue Hands” employee volunteers who regularly conduct philanthropic initiatives for the hospital.

Rodriguez explained that while 80 percent of all children with cancer in developed countries live, the case is reversed in developing countries where survival rate is only 30 percent to as low as 10 percent due to poverty, inadequate information or misconceptions (such as cancer is a death sentence or only adults can have cancer), lack of trained personnel on childhood cancer in primary healthcare facilities and inadequate childhood cancer specialty centers.

Alarmingly, of the estimated 175,000 children diagnosed with cancer worldwide, approximately 90 percent live in low- and middle-income countries (equivalent to almost 250 children dying every day from cancer).

Dr. Julius Lecciones, project coordinator of My Child Matters program in the Philippines and PCMC’s executive director, said: “In a way, we are fortunate enough that here in the Philippines, PCMC through the My Child Matters program’s public awareness campaign that we have initiated for the last seven years, we were able to reduce late diagnosis of cancer in children from 70 percent to 30 percent. Early diagnosis of cancer as well as rare blood disorders in children and young people saves lives.”

The My Child Matters program is a public mobilization campaign that started in 2006 to improve access to care of Filipino children with cancer.

Fragile

But he warned that the program’s gains in reducing abandonment of treatment from 80 percent to 10 percent, and increasing survival rates from 16 percent to 68 percent at the PCMC are still fragile. “We might lose these gains if we do not involve all sectors of society to put childhood cancer in the forefront of the national health agenda.”

Lecciones was happy to announce that the hospital’s program was once again selected for extension by the Union International Cancer Control (UICC) based in Geneva, Switzerland and Sanofi Espoir Foundation of Paris for extension from 20 currently active projects in 16 countries in Asia, Africa and Latin America.

The 200,000 euros (around P7 million) was awarded to PCMC to extend its childhood cancer project for three more years.

The UICC and sanofi-aventis have already donated around P10 million to PCMC since 2006.

According to Lecciones, the new grant will be used to galvanize support of the public for a national comprehensive childhood cancer control and management plan. “As a part of the grant, public awareness campaign will be further strengthened for the early detection and effective treatment of cancer so that parents of children who are cancer patients will be enlightened that cancer is curable.”

Help other hospitals

He added that part of the new grant will also be used to help 24 collaborating government hospitals around the country in building their capacities to accurately diagnose and effectively treat several forms of childhood cancer and to be able to provide the quality of service similar to what is being provided by PCMC.

Lecciones said PCMC will also push its agenda to Congress so a law could be passed to provide further support in treating children with cancer and rare blood disorders.

He added they were able to involve the Department of Health’s National Center for Pharmaceutical Access and Management (NCPAM) through its ALL Medicines Access Program (ALLMAP) to provide free chemotherapy drugs to poor patients in government hospitals since 2010.

Aside from the chemotherapy drugs, NCPAM will also spend for the treatment of infections and giving antibiotics to manage the side effects of those undergoing chemotherapy.

Great news

“This is great news for us parents who could barely pay for our child’s medications,” said Cristy Monsanto, Mon Christian’s mother.

The 46-year-old housewife related that aside from the P6,000 she and her 52-year-old husband have to raise for the weekly transfusions, both also have to find ways to shoulder the P400 needed for the daily chelation therapy (that prevent damages to Mon Christian’s liver, heart and other parts of his body).

Cristy said: “Considering my husband is not formally employed, we both have to seek financial assistance from several congressmen, the Philippine Charity Sweepstakes Office and other charitable institutions. At least we could buy medicines at a discounted price and get the best service at PCMC.”

She said that seeing that their only child survive a rare disease, grow up and live a normal life or even participate in fun and educational activities with his fellow young survivors, all the sacrifices are worth it.

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